Journal of palliative medicine
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Background: Glioma patients make frequent decisions regarding treatment and end-of-life care despite cognitive limitations. We evaluated the feasibility of incorporating the Macarthur Competence Assessment Tool for Treatment (MacCAT-T) to assess decision-making ability in glioma patients. Methods: High-grade glioma patients were consented to an IRB-approved prospective study at one of three treatment decision time points. Patients completed the Montreal Cognitive Assessment (MoCA) and providers informally assessed patient decision-making ability based on neurologic examination. ⋯ Clinicians deemed 10 patients to possess sufficient decision-making ability, yet, 6 of them demonstrated impairments in reasoning on the MacCAT-T. Seven patients yielded discordant MOCA and MacCAT-T data, five patients with MOCA score ≥26 showed qualitative MacCAT-T impairments in Reasoning and five patients who scored <21 were within nonimpaired ranges for three of four decision-making domains. Conclusion: MacCAT-T administration was feasible and informative to patients but findings were discordant from MOCA and informal provider assessments. The MacCAT-T may help in identifying mild Reasoning impairments related to patients' initial treatment decisions and should be studied further to determine its role in clinical practice.
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Background: Low-dose methadone in addition to another ongoing opioid therapy is a promising approach for managing complex cancer-related pain and is, despite limited evidence, used in clinical practice. Objective: To investigate the use of low-dose methadone in specialized palliative care in Sweden. Design: Specialized palliative care services in Sweden answered a survey regarding methadone use in individual patients over 12 months. ⋯ Adverse effects were seen in 20% of the patients; none of these was severe. Conclusion: The addition of low-dose methadone to an ongoing opioid therapy in patients with complex cancer-related pain is well established in Swedish specialized palliative care. It appears to have good pain-relieving effects and to be safe.
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Background: Spiritual distress among family members of patients in the intensive care unit (ICU) has not been well characterized. This limits clinicians' understanding of how to best offer support. Objective: To explore how family members experience spiritual distress, and how it is recognized and support offered within the ICU context. Design: A qualitative study involving interviews and focus groups between May 2016 and April 2017. Setting/Subjects: Family members of ICU patients (n = 18), spiritual health practitioners (n = 10), and an interprofessional group of clinicians who work in the ICU (n = 32). Measurements: Transcribed data were analyzed using interpretive description. Results: The experience of spiritual distress was variably described by all three groups through concepts, modulators, expressions and manifestations, and ways in which spiritual distress was addressed. Concepts included loss of meaning, purpose and connection, tension in beliefs, and interconnected distress. ⋯ Expressions and manifestations were unique and individual, involving verbal expressions of thoughts and emotions, as well as behavioral manifestations of coping. Clinical strategies for addressing spiritual distress were described through general principles, specific strategies for discussing spiritual distress, and ways in which spiritual support can be offered. Conclusions: Our study provides a rich description of how spiritual distress is experienced by family members of ICU patients, and how spiritual health practitioners and clinicians recognize spiritual distress and offer support. These findings will help inform clinician education and initiatives to better support families of critically ill patients.
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Background: Prior work in adult oncology suggests minority patients are less involved in decision making than preferred. However, few studies have explored decision-making experiences of minority parents in pediatric oncology. Objective: To determine whether parental decision-making preferences and experiences vary by race/ethnicity. Design: Questionnaire-based cohort study. Setting/Subjects: Three hundred sixty five parents of children with cancer and their oncologists at two academic centers. Measurements: Parents reported on preferred and actual decision-making roles. Associations between race/ethnicity and decision-making outcomes determined by chi-squared test. Results: Most parents preferred shared decision making (235/368, 64%), whereas 23% (84/368) preferred parent-led decision making and 13% (49/368) preferred oncologist-led decision making. ⋯ Oncologists accurately predicted parental preferences for decision making 49% of the time (n = 165/338), but accuracy also differed by race and ethnicity. Oncologists accurately predicted parental preferences for 53% of white parents (140/266), 23% of black parents (5/22), 37% of Hispanic parents (10/27), and 43% of Asian/other race parents (10/23) (p = 0.026, chi-squared test). Conclusions: Minority parents held more active roles than white parents, and oncologists had more difficulty predicting decisional preferences for minority parents relative to white parents. These findings suggest that minority parents are at risk of inferior decision-making experiences.